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1.
Eur J Clin Microbiol Infect Dis ; 41(1): 29-36, 2022 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-34414518

RESUMO

Antimicrobial therapy in terminally ill patients remains controversial as goals of care tend to be focused on optimizing comfort. International guidelines recommend for antibiotic stewardship program (ASP) involvement in antibiotic decisions in palliative patients. The primary objective was to evaluate the clinical impact of ASP interventions made to stop broad-spectrum intravenous antibiotics in terminally ill patients. This was a retrospective chart review of 459 terminally ill patients in Singapore General Hospital audited by ASP between December 2010 and December 2018. Antibiotic duration, time-to-terminal discharge for end-of-life care, time-to-mortality, and mortality rates of patients with antibiotics ceased or continued upon ASP recommendations were compared. A total of 283 and 176 antibiotic courses were ceased and continued post-intervention, respectively. The intervention acceptance rate was 61.7%. The 7-day mortality rate (47.3% vs 61.9%, p = 0.003) was lower in the ceased group, while 30-day mortality rate (76.0% vs 81.2%, p = 0.203) and time-to-mortality post-intervention (3 [0-24] vs 2 [0-27] days, p = 0.066) did not differ between the ceased and continued groups. After excluding the 57 patients who had antibiotics continued until death within 48 h of intervention, only time-to-mortality post-intervention was statistically significantly shorter in the ceased group (3 [0-24] vs 4 [0-27], p < 0.001). Of the 131 terminally discharged patients, antibiotic duration (4 [0-17] vs 6.5 [1-14] days, p = 0.001) and time-to-terminal discharge post-intervention (6 [0-74] vs 10.5 [3-63] days, p = 0.001) were shorter in the ceased group. Antibiotic cessation in terminally ill patients was safe, and was associated with a significantly shorter time-to-terminal discharge.


Assuntos
Antibacterianos/uso terapêutico , Infecções Bacterianas/tratamento farmacológico , Cuidados Paliativos/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Gestão de Antimicrobianos , Infecções Bacterianas/mortalidade , Feminino , Hospitais Gerais , Humanos , Tempo de Internação , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Singapura , Doente Terminal/estatística & dados numéricos , Adulto Jovem
2.
Support Care Cancer ; 29(1): 525-531, 2021 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-32415383

RESUMO

PURPOSE: Our study aimed to evaluate the association between CDS and survival time using the likelihood of receiving CDS to select a matched non-CDS group through an accurate measurement of survival time based on initiation of CDS. METHODS: A retrospective cohort study was performed using an electronic database to collect data regarding terminally ill cancer patients admitted to a specialized palliative care unit from January 2012 to December 2016. We first used a Cox proportional hazard model with receiving CDS as the outcome to identify individuals with the highest plausibility of receiving CDS among the non-CDS group (n = 663). We then performed a multiple regression analysis comparing the CDS group (n = 311) and weighted non-CDS group (n = 311), using initiation of CDS (actual for the CDS group; estimated for the non-CDS group) as the starting time-point for measuring survival time. RESULTS: Approximately 32% of participants received CDS. The most common indications were delirium or agitation (58.2%), intractable pain (28.9%), and dyspnea (10.6%). Final multiple regression analysis revealed that survival time was longer in the CDS group than in the non-CDS group (Exp(ß), 1.41; P < 0.001). Longer survival with CDS was more prominent in females, patients with renal dysfunction, and individuals with low C-reactive protein (CRP) or ferritin, compared with their counterpart subgroup. CONCLUSIONS: CDS was not associated with shortened survival; instead, it was associated with longer survival in our terminally ill cancer patients. Further studies in other populations are required to confirm or refute these findings.


Assuntos
Sedação Profunda/efeitos adversos , Hipnóticos e Sedativos/efeitos adversos , Neoplasias/mortalidade , Cuidados Paliativos/métodos , Doente Terminal/estatística & dados numéricos , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Estudos Retrospectivos
3.
Lancet ; 393(10176): 1150-1163, 2019 Mar 16.
Artigo em Inglês | MEDLINE | ID: mdl-30894271

RESUMO

When a child is diagnosed with a life-threatening condition, one of the most challenging tasks facing health-care professionals is how to communicate this to the child, and to their parents or caregivers. Evidence-based guidelines are urgently needed for all health-care settings, from tertiary referral centres in high-income countries to resource limited environments in low-income and middle-income countries, where rates of child mortality are high. We place this Review in the context of children's developing understanding of illness and death. We review the effect of communication on children's emotional, behavioural, and social functioning, as well as treatment adherence, disease progression, and wider family relationships. We consider the factors that influence the process of communication and the preferences of children, families, and health-care professionals about how to convey the diagnosis. Critically, the barriers and challenges to effective communication are explored. Finally, we outline principles for communicating with children, parents, and caregivers, generated from a workshop of international experts.


Assuntos
Comunicação , Pessoal de Saúde/ética , Pais/educação , Doente Terminal/psicologia , Adolescente , Criança , Pré-Escolar , Assistência à Saúde Culturalmente Competente/normas , Tomada de Decisões , Progressão da Doença , Prática Clínica Baseada em Evidências/métodos , Humanos , Pais/psicologia , Doente Terminal/estatística & dados numéricos , Cooperação e Adesão ao Tratamento
4.
Support Care Cancer ; 28(12): 6045-6055, 2020 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-32296981

RESUMO

PURPOSE: The responsibility of taking care of terminal patients is accepted as a role of family members in Taiwan. Only a few studies have focused on the effect of palliative care consultation service (PCCS) on caregiver burden between terminal cancer family caregivers (CFCs) and non-cancer family caregivers (NCFCs). Therefore, the purpose of this study is to address the effect of PCCS on caregiver burden between CFC and NCFC over time. METHODS: A prospective longitudinal study was conducted in a medical center in northern Taiwan from July to November 2017. The participants were both terminally ill cancer and non-cancer patients who were prepared to receive PCCS, as well as their family caregivers. Characteristics including family caregivers and terminal patients and Family Caregiver Burden Scale (FCBS) were recorded pre-, 7, and 14 days following PCCS. A generalized estimating equation model was used to analyze the change in the level of family caregiver burden (FCB) between CFC and NCFC. RESULTS: The study revealed that there were no statistically significant differences in FCB between CFC and NCFC 7 days and 14 days after PCCS (p > 0.05). However, FCB significantly decreased in both CFC and NCFC from pre-PCCS to 14 days after PCCS (ß = - 12.67, p = 0.013). PPI of patients was the key predictor of FCB over time following PCCS (ß = 1.14, p = 0.013). CONCLUSIONS: This study showed that PCCS can improve FCB in not only CFC but also NCFC. We suggest that PCCS should be used more widely in supporting family caregivers of terminally ill patients to reduce caregiver burden.


Assuntos
Sobrecarga do Cuidador/epidemiologia , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Encaminhamento e Consulta/organização & administração , Doente Terminal , Adulto , Idoso , Idoso de 80 Anos ou mais , Sobrecarga do Cuidador/prevenção & controle , Cuidadores/organização & administração , Cuidadores/psicologia , Família/psicologia , Feminino , Serviços de Saúde/normas , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Neoplasias/epidemiologia , Cuidados Paliativos/normas , Cuidados Paliativos/estatística & dados numéricos , Avaliação de Programas e Projetos de Saúde , Estudos Prospectivos , Encaminhamento e Consulta/normas , Encaminhamento e Consulta/estatística & dados numéricos , Taiwan/epidemiologia , Doente Terminal/psicologia , Doente Terminal/estatística & dados numéricos , Fatores de Tempo , Adulto Jovem
5.
BMC Fam Pract ; 21(1): 136, 2020 07 09.
Artigo em Inglês | MEDLINE | ID: mdl-32646380

RESUMO

BACKGROUND: As part of a broader study to improve the capacity for advance care planning (ACP) in primary healthcare settings, the research team set out to develop and validate a computerized algorithm to help primary care physicians identify individuals at risk of death, and also carried out focus groups and interviews with relevant stakeholder groups. Interviews with patients and family caregivers were carried out in parallel to algorithm development and validation to examine (1) views on early identification of individuals at risk of deteriorating health or dying; (2) views on the use of a computerized algorithm for early identification; and (3) preferences and challenges for ACP. METHODS: Fourteen participants were recruited from two Canadian provinces. Participants included individuals aged 65 and older with declining health and self-identified caregivers of individuals aged 65 and older with declining health. Semi-structured interviews were conducted via telephone. A qualitative descriptive analytic approach was employed, which focused on summarizing and describing the informational contents of the data. RESULTS: Participants supported the early identification of patients at risk of deteriorating health or dying. Early identification was viewed as conducive to planning not only for death, but for the remainder of life. Participants were also supportive of the use of a computerized algorithm to assist with early identification, although limitations were recognized. While participants felt that having family physicians assume responsibility for early identification and ACP was appropriate, questions arose around feasibility, including whether family physicians have sufficient time for ACP. Preferences related to the content of and approach to ACP discussions were highly individualized. Required supports during ACP include informational and emotional supports. CONCLUSIONS: This work supports the role of primary care providers in the early identification of individuals at risk of deteriorating health or death and the process of ACP. To improve ACP capacity in primary healthcare settings, compensation systems for primary care providers should be adjusted to ensure appropriate compensation and to accommodate longer ACP appointments. Additional resources and more established links to community organizations and services will also be required to facilitate referrals to relevant community services as part of the ACP process.


Assuntos
Planejamento Antecipado de Cuidados/organização & administração , Cuidadores/psicologia , Deterioração Clínica , Diagnóstico Precoce , Médicos de Atenção Primária , Assistência Terminal , Doente Terminal , Idoso , Algoritmos , Canadá , Feminino , Humanos , Masculino , Avaliação das Necessidades , Preferência do Paciente , Médicos de Atenção Primária/organização & administração , Médicos de Atenção Primária/normas , Melhoria de Qualidade/organização & administração , Medição de Risco/métodos , Assistência Terminal/métodos , Assistência Terminal/psicologia , Doente Terminal/psicologia , Doente Terminal/estatística & dados numéricos
6.
BMC Palliat Care ; 19(1): 49, 2020 Apr 16.
Artigo em Inglês | MEDLINE | ID: mdl-32299415

RESUMO

BACKGROUND: Although desire to die of varying intensity and permanence is frequent in patients receiving palliative care, uncertainty exists concerning appropriate therapeutic responses to it. To support health professionals in dealing with patients´ potential desire to die, a training program and a semi-structured clinical approach was developed. This study aimed for a revision of and consensus building on the clinical approach to support proactively addressing desire to die and routine exploration of death and dying distress. METHODS: Within a sequential mixed methods design, we invited 16 palliative patients to participate in semi-structured interviews and 377 (inter-)national experts to attend a two-round Delphi process. Interviews were analyzed using qualitative content analysis and an agreement consensus for the Delphi was determined according to predefined criteria. RESULTS: 11 (69%) patients from different settings participated in face-to-face interviews. As key issues for conversations on desire to die they pointed out the relationship between professionals and patients, the setting and support from external experts, if required. A set of 149 (40%) experts (132/89% from Germany, 17/11% from 9 other countries) evaluated ten domains of the semi-structured clinical approach. There was immediate consensus on nine domains concerning conversation design, suggestions for (self-)reflection, and further recommended action. The one domain in which consensus was not achieved until the second round was "proactively addressing desire to die". CONCLUSIONS: We have provided the first semi-structured clinical approach to identify and address desire to die and to respond therapeutically - based on evidence, patients' views and consensus among professional experts. TRIAL REGISTRATION: The study is registered in the German Clinical Trials Register (DRKS00012988; registration date: 27.9.2017) and in the Health Services Research Database (VfD_DEDIPOM_17_003889; registration date: 14.9.2017).


Assuntos
Atitude Frente a Morte , Cuidados Paliativos/normas , Doente Terminal/psicologia , Idoso , Idoso de 80 Anos ou mais , Técnica Delphi , Feminino , Alemanha , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Pesquisa Qualitativa , Inquéritos e Questionários , Doente Terminal/estatística & dados numéricos
7.
Ann Surg Oncol ; 26(8): 2336-2345, 2019 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-30969388

RESUMO

INTRODUCTION: The symptom profile in cancer patients and the association between palliative care (PC) and symptoms has not been studied in the general population. We addressed these gaps in gastrointestinal (GI) cancer patients in the final year of life. METHODS: Patients dying of esophageal, gastric, colon, and anorectal cancers during 2003-2015 were identified. Symptom scores were recorded in the year before death using the Edmonton Symptom Assessment System (ESAS), which includes scores from 0 to 10 in nine domains. Symptom severity was categorized as none-mild (≤ 3) or moderate-severe (≥ 4-10). Adjusted associations between outpatient PC and moderate-severe ESAS scores were determined, and the effect of PC initiation on ESAS scores was estimated. RESULTS: The cohort included 11,242 patients who died (esophageal [17%], gastric [20%], colon [38%], and anorectal [26%] cancers). Fifty percent experienced moderate-severe scores in tiredness, lack of well-being, and lack of appetite earlier (weeks 18 to 12 before death), whereas 50% experienced moderate-severe scores in drowsiness, pain, and shortness of breath later (weeks 5 to 2 before death) in the disease course. Outpatient PC was associated with an increased likelihood of moderate-severe scores in all domains, with the highest score in pain (odds ratio [OR] 1.86, 95% confidence interval [CI] 1.68-2.05). In PC-naïve patients with moderate-severe scores, initiation of outpatient PC was associated with a 1- to 3-point decrease in subsequent scores, with the greatest reductions in pain (OR - 1.91, 95% CI - 2.11 to - 1.70) and nausea (OR - 3.01, 95% CI - 3.31 to - 2.71). CONCLUSION: GI cancer patients experience high symptom burden in the final year of life. Outpatient PC initiation is associated with a decrease in symptoms.


Assuntos
Assistência Ambulatorial/métodos , Neoplasias Gastrointestinais/complicações , Cuidados Paliativos/métodos , Índice de Gravidade de Doença , Avaliação de Sintomas , Doente Terminal/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Canadá/epidemiologia , Depressão/diagnóstico , Depressão/etiologia , Fadiga/diagnóstico , Fadiga/etiologia , Feminino , Seguimentos , Neoplasias Gastrointestinais/epidemiologia , Neoplasias Gastrointestinais/terapia , Humanos , Masculino , Pessoa de Meia-Idade , Náusea/diagnóstico , Náusea/etiologia , Dor/diagnóstico , Dor/etiologia , Prognóstico , Qualidade de Vida , Taxa de Sobrevida
8.
J Surg Res ; 243: 391-398, 2019 11.
Artigo em Inglês | MEDLINE | ID: mdl-31277017

RESUMO

BACKGROUND: Despite the frequent occurrence of interhospital transfers in emergency general surgery (EGS), rates of transfer of complications are undescribed. Improved understanding of hospital transfer patterns has a multitude of implications, including quality measurement. The objective of this study was to describe individual hospital transfer rates of mortal encounters. MATERIALS AND METHODS: A retrospective review was undertaken from 2013 to 2015 of the Maryland Health Services Cost Review Commission database. Two groups of EGS encounters were identified: encounters with death following transfer and encounters with death without transfer. The percentage of mortal encounters transferred was defined as the percentage of EGS hospital encounters with mortality initially presenting to a hospital transferred to another hospital before death at the receiving hospital. RESULTS: Overall, 370,242 total EGS encounters were included, with 17,003 (4.6%) of the total EGS encounters with mortality. Encounters with death without transfer encompassed 15,604 (91.8%) of mortal EGS encounters and encounters with death following transfer 1399 (8.2%). EGS disease categories of esophageal varices or perforation, necrotizing fasciitis, enterocutaneous fistula, and pancreatitis had over 10% of these total mortal encounters with death following transfer. For individual hospitals, percentage of mortal encounters transferred ranged from 0.8% to 35.2%. The percentage of mortal encounters transferred was inversely correlated with annual EGS hospital volume for all state hospitals (P < 0.001, r = -0.57). CONCLUSIONS: Broad variability in individual hospital practices exists for mortality transferred to other institutions. Application of this knowledge of percentage of mortal encounters transferred includes consideration in hospital quality metrics.


Assuntos
Serviço Hospitalar de Emergência/estatística & dados numéricos , Cirurgia Geral/estatística & dados numéricos , Transferência de Pacientes/estatística & dados numéricos , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Adulto , Idoso , Feminino , Mortalidade Hospitalar , Humanos , Masculino , Maryland , Pessoa de Meia-Idade , Estudos Retrospectivos , Adulto Jovem
9.
CMAJ ; 191(21): E574-E580, 2019 05 27.
Artigo em Inglês | MEDLINE | ID: mdl-31133604

RESUMO

BACKGROUND: Although advancements in systemic therapy have improved the outlook for pancreatic adenocarcinoma, it is not known if patients get access to these therapies. We aimed to examine the patterns and factors associated with access to specialized cancer consultations and subsequent receipt of cancer-directed therapy for patients with non-curative pancreatic adenocarcinoma. METHODS: We conducted a population-based analysis of noncurative pancreatic adenocarcinoma diagnosed over 2005-2016 in Ontario by linking administrative health care data sets. Our primary outcomes were specialized cancer consultation and receipt of cancer-directed therapy (chemotherapy or a combination of chemo- and radiation therapy [chemoradiation therapy]). We examined specialized cancer consultation with hepato-pancreatico-biliary surgery, medical and radiation oncology. We used multivariable logistic regression to identify factors associated with medical oncology consultation and cancer-directed therapy. RESULTS: Of 10 881 patients, 64.9% had a consultation with specialists in medical oncology, 35.1% with hepatopancreatico-biliary surgery and 24.7% with radiation oncology. Sociodemographic characteristics were not associated with the likelihood of medical oncology consultation. Of these patients, 4144 received cancer-directed therapy, representing 38.1% of all patients and 58.6% of those who consulted with medical oncology. Of 6737 patients not receiving cancer-directed therapy, 2988 (44.4%) had a consultation with medical oncology. Older age and lowest income quintile were independently associated with lower likelihood of cancer-directed therapy. If the first specialized cancer consultation was with medical or radiation oncology, the likelihood of cancer-directed therapy was significantly higher compared with surgery. INTERPRETATION: A considerable proportion of patients with noncurable pancreatic adenocarcinoma in Ontario did not have a specialized cancer consultation and most did not receive cancer-directed therapy. We identified disparities in specialized cancer consultation and receipt of systemic cancer-directed therapy that indicate potential gaps in assessment.


Assuntos
Adenocarcinoma/terapia , Neoplasias Pancreáticas/terapia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Encaminhamento e Consulta/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Adenocarcinoma/mortalidade , Idoso , Terapia Combinada , Feminino , Cuidados Paliativos na Terminalidade da Vida , Humanos , Masculino , Pessoa de Meia-Idade , Ontário/epidemiologia , Neoplasias Pancreáticas/mortalidade , Vigilância da População
10.
Age Ageing ; 48(5): 680-687, 2019 09 01.
Artigo em Inglês | MEDLINE | ID: mdl-31127300

RESUMO

BACKGROUND: frequent emergency department (ED) attendance at the end of life disrupts care continuity and contradicts most patients' preference for home-based care. OBJECTIVE: to examine factors associated with frequent (≥3) end of life ED attendances among older people to identify opportunities to improve care. METHODS: pooled data from two mortality follow-back surveys in England. Respondents were family members of people aged ≥65 who died four to ten months previously. We used multivariable modified Poisson regression to examine illness, service and sociodemographic factors associated with ≥3 ED attendances, and directed content analysis to explore free-text responses. RESULTS: 688 respondents (responses from 42.0%); most were sons/daughters (60.5%). Mean age at death was 85 years. 36.5% had a primary diagnosis of cancer and 16.3% respiratory disease. 80/661 (12.1%) attended ED ≥3 times, accounting for 43% of all end of life attendances. From the multivariable model, respiratory disease (reference cancer) and ≥2 comorbidities (reference 0) were associated with frequent ED attendance (adjusted prevalence ratio 2.12, 95% CI 1.21-3.71 and 1.81, 1.07-3.06). Those with ≥7 community nursing contacts (reference 0 contacts) were more likely to frequently attend ED (2.65, 1.49-4.72), whereas those identifying a key health professional were less likely (0.58, 0.37-0.88). Analysis of free-text found inadequate community support, lack of coordinated care and untimely hospital discharge were key issues. CONCLUSIONS: assigning a key health professional to older people at increased risk of frequent end of life ED attendance, e.g. those with respiratory disease and/or multiple comorbidities, may reduce ED attendances by improving care coordination.


Assuntos
Continuidade da Assistência ao Paciente/estatística & dados numéricos , Serviço Hospitalar de Emergência/estatística & dados numéricos , Hospitalização/estatística & dados numéricos , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Melhoria de Qualidade , Doente Terminal/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Inglaterra/epidemiologia , Feminino , Humanos , Masculino , Taxa de Sobrevida/tendências
11.
J Head Trauma Rehabil ; 34(1): E39-E45, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-29863612

RESUMO

OBJECTIVE: To describe the natural history of patients with traumatic brain injury (TBI) admitted to skilled nursing facilities (SNFs) following hospitalizations. SETTING: Between 2005 and 2014. PARTICIPANTS: Adults who had incident admissions to skilled nursing facilities (SNFs) with a diagnosis of TBI. DESIGN: Retrospective review of the Minimum Data Set. MAIN MEASURES: Main variables were cognitive and physical function, length of stay, presence of feeding tube, terminal condition, and dementia. RESULTS: Incident admissions to SNFs increased annually from 17 247 patients to 20 787 from 2005 to 2014. The percentage of patients with activities of daily living score 23 or more decreased from 25% to 14% (P < .05). The overall percentage of patients with severe cognitive impairment decreased from 18% to 10% (P < .05). More patients had a diagnosis of dementia in 2014 compared with previous years (P < .05), and the presence of a terminal condition increased from 1% to 1.5% over the 10-year period (P < .05). The percentage of patients who stayed fewer than 30 days was noted to increase steadily over the 10 years, starting with 48% in 2005 and ending with 53% in 2013 (P < .05). CONCLUSION: Understanding past trends in TBI admissions to SNFs is necessary to guide appropriate discharge and predict future demand, as well as inform SNF policy and practice necessary to care for this subgroup of patients.


Assuntos
Lesões Encefálicas Traumáticas/epidemiologia , Admissão do Paciente/tendências , Instituições de Cuidados Especializados de Enfermagem , Distribuição por Idade , Idoso , Idoso de 80 Anos ou mais , Transtornos Cognitivos/epidemiologia , Estudos de Coortes , Demência/epidemiologia , Avaliação da Deficiência , Feminino , Humanos , Tempo de Internação/tendências , Masculino , Estudos Retrospectivos , Distribuição por Sexo , Doente Terminal/estatística & dados numéricos , Estados Unidos/epidemiologia
12.
Palliat Support Care ; 17(5): 515-522, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-30702057

RESUMO

OBJECTIVE: Family caregivers (FCs) in China provide hospice care to terminally ill cancer patients; however, few studies have been conducted in China on caregiver burden and bereavement experiences as a process that continues over time. The purpose of this study was to identify the main elements of caring and bereavement experiences for FCs caring for patients diagnosed with terminal cancer. METHOD: Twenty in-depth qualitative semistructured interviews were conducted with FCs providing care in a hospice unit in Shenzhen, Southern China. Interview transcripts were analyzed via thematic content analysis. RESULT: A framework based on the following eight principal themes was developed through content analysis of our FC interviews: symptoms of the illness, the truth-telling process, attitudes toward death, the "color" of death, social and professional support, the moment of death, and grief and loss. SIGNIFICANCE OF RESULTS: The analysis showed that caregiving may positively or negatively influence the bereavement process.


Assuntos
Luto , Cuidadores/psicologia , Neoplasias/mortalidade , Adaptação Psicológica , Adulto , Idoso , Atitude Frente a Morte , China , Efeitos Psicossociais da Doença , Feminino , Humanos , Entrevistas como Assunto/métodos , Masculino , Pessoa de Meia-Idade , Neoplasias/complicações , Neoplasias/psicologia , Pesquisa Qualitativa , Doente Terminal/psicologia , Doente Terminal/estatística & dados numéricos
13.
Rural Remote Health ; 19(3): 5285, 2019 09.
Artigo em Inglês | MEDLINE | ID: mdl-31533435

RESUMO

INTRODUCTION: Despite being one of the most avoided topics of all time, death is a guaranteed eventuality for us all. However, quality psychosocial care as death approaches is not a guarantee. Where people reside is likely to impact a person's accessibility to quality psychological, emotional, social, spiritual and cultural support. Structural forces such as funding and resourcing will also be a contributing factor. Social workers have specific expertise in the psychosocial domain, yet enablers and inhibitors to social work referrals to support terminally ill clients in rural and remote communities have not been well explored. This study had two primary aims: to investigate the provision of psychosocial care for palliative clients in rural Australian communities and to identify barriers and facilitators of social work referrals to address psychosocial concerns for palliative care clients. METHODS: Qualitative interviews were conducted with 38 rural participants across 24 rural and remote communities in the state of Queensland, Australia. The researcher travelled 7500 km to conduct these interviews over a 5-week period. The Rural, Remote, Metropolitan Areas classifications provided guidance on determining which communities would be considered regional, rural or remote communities. To explore the aims of the study, four participant groups were selected to participate in semi-structured qualitative interviews: group 1, social workers; group 2, community health nurses; group 3, community workers; and group 4, palliative clients/carers. For a comprehensive analysis, it was important to not only hear the views of those addressing psychosocial needs, but also include the voices of those receiving psychosocial care, resulting in all perspectives being captured. A thematic analysis was utilised, from which prominent, recurring themes were identified to form the basis for recommendations for future psychosocial care provision. RESULTS: Findings revealed that psychosocial needs for terminally ill clients were addressed in an ad-hoc, inconsistent manner across rural and remote Queensland. Eligibility and access for palliative care program funding impacted service delivery and what support could be provided. Furthermore, social workers were limited in what they could offer due to the vast geographical distances, which inhibited quality face-to-face interventions and the capacity to address urgent psychosocial concerns. This resulted in community nurses assuming the role that social workers would usually undertake in more urban settings. In communities where a generalist social worker was employed, referrals were often impacted by the perceptions of other professionals of social work competencies. Finally, the results highlighted that a disparity exists between the perspectives of palliative care clients and their caregivers and understanding of healthcare professionals of what were identified as important psychosocial concerns. CONCLUSIONS: Palliative care funding in Queensland is insufficient to effectively address the existing demand. Resourcing for rural and remote palliative care in Queensland is inadequate to ensure holistic and quality approaches to psychosocial care in the end stages of life. Increased resourcing would result in better care, for longer time frames throughout a disease trajectory. Education and training for health practitioners to address skills and competencies in psychosocial care for terminally ill clients is a recommendation for professional development. Furthermore, there is a need for social work to develop national standards and competencies to enhance practitioner confidence to efficiently address psychosocial concerns for terminally ill clients. Whilst this study was undertaken in Queensland, Australia, the findings are echoed in other international rural communities.


Assuntos
Cuidados Paliativos/organização & administração , Serviços de Saúde Rural/organização & administração , População Rural/estatística & dados numéricos , Serviço Social/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Feminino , Necessidades e Demandas de Serviços de Saúde/organização & administração , Humanos , Masculino , Pesquisa Qualitativa , Queensland
14.
Palliat Med ; 32(1): 6-16, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28786339

RESUMO

BACKGROUND: Ensuring adequate end-of-life care for prisoners is a critical issue. In France, data investigating the impact of laws allowing release of seriously ill prisoners are lacking. AIM: To assess the number and characteristics of prisoners requiring palliative care in French prisons. DESIGN: A prospective, national survey collecting data over a 3-month period. SETTING/PARTICIPANTS: All healthcare units ( n = 190) providing care for prisoners in France. The prison population was 66,698 during the study period. Data collection concerned prisoners requiring end-of-life care, that is, with serious, advanced, progressive, or terminal illness and life expectancy <1 year. RESULTS: Estimated annual prevalence of ill prisoners requiring end-of-life care was 15.2 (confidence interval: 12.5-18.3) per 10,000 prisoners. The observed number of prisoners requiring palliative care ( n = 50) was twice as high as the expected age- and sex-standardized number based on the general population and similar to the expected number among persons 10 years older in the free community. In all, 41 of 44 (93%) of identified ill prisoners were eligible for temporary or permanent compassionate release, according to their practitioner. Only 33 of 48 (68%) of ill prisoners requested suspension or reduction in their sentence on medical grounds; half (16/33) received a positive answer. CONCLUSION: The proportion of prisoners requiring palliative care is higher than expected in the general population. The general frailty and co-existing conditions of prisoners before incarceration and the acceleration of these phenomena in prison could explain this increase in end-of-life situations among prisoners.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida/organização & administração , Enfermagem de Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Cuidados Paliativos/organização & administração , Cuidados Paliativos/estatística & dados numéricos , Prisioneiros/estatística & dados numéricos , Assistência Terminal/organização & administração , Assistência Terminal/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , França , Humanos , Masculino , Pessoa de Meia-Idade , Prevalência , Estudos Prospectivos , Inquéritos e Questionários , Doente Terminal/estatística & dados numéricos , Adulto Jovem
15.
Palliat Med ; 32(1): 23-35, 2018 01.
Artigo em Inglês | MEDLINE | ID: mdl-28502218

RESUMO

BACKGROUND: Lesbian, gay, bisexual and/or trans (LGBT) people have higher risk of certain life-limiting illnesses and unmet needs in advanced illness and bereavement. ACCESSCare is the first national study to examine in depth the experiences of LGBT people facing advanced illness. AIM: To explore health-care experiences of LGBT people facing advanced illness to elicit views regarding sharing identity (sexual orientation/gender history), accessing services, discrimination/exclusion and best-practice examples. DESIGN: Semi-structured in-depth qualitative interviews analysed using thematic analysis. SETTING/PARTICIPANTS: In total, 40 LGBT people from across the United Kingdom facing advanced illness: cancer ( n = 21), non-cancer ( n = 16) and both a cancer and a non-cancer conditions ( n = 3). RESULTS: In total, five main themes emerged: (1) person-centred care needs that may require additional/different consideration for LGBT people (including different social support structures and additional legal concerns), (2) service level or interactional (created in the consultation) barriers/stressors (including heteronormative assumptions and homophobic/transphobic behaviours), (3) invisible barriers/stressors (including the historical context of pathology/criminalisation, fears and experiences of discrimination) and (4) service level or interactional facilitators (including acknowledging and including partners in critical discussions). These all shape (5) individuals' preferences for disclosing identity. Prior experiences of discrimination or violence, in response to disclosure, were carried into future care interactions and heightened with the frailty of advanced illness. CONCLUSION: Despite recent legislative change, experiences of discrimination and exclusion in health care persist for LGBT people. Ten recommendations, for health-care professionals and services/institutions, are made from the data. These are simple, low cost and offer potential gains in access to, and outcomes of, care for LGBT people.


Assuntos
Acessibilidade aos Serviços de Saúde/organização & administração , Acessibilidade aos Serviços de Saúde/estatística & dados numéricos , Disparidades em Assistência à Saúde/organização & administração , Disparidades em Assistência à Saúde/estatística & dados numéricos , Minorias Sexuais e de Gênero/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , Pessoas Transgênero/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Reino Unido , Adulto Jovem
16.
J Adv Nurs ; 74(2): 395-406, 2018 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-28833352

RESUMO

AIMS: The purposes of this study were to identify the impact of a case management programme on the related factors of refusing treatment or discontinuing treatment in Taiwanese colorectal cancer patients. BACKGROUND: Side effects of anti-cancer treatments are associated with refusing treatment and discontinuing treatment. DESIGN: This case-control study, longitudinal database and secondary analysis of population-based data was conducted from 2009-2012. METHODS: Logistic regression was used to reveal the factors related to refusing or discontinuing treatment. RESULTS: Of the 68 patients who refused treatment, the top reasons for refusing treatment were patients or their family considered the patients poor physical condition, difficulty in enduring any condition likely to cause physical discomfort from the disease treatment, selected complementary and alternative medicine, patients or their families or friends experienced negative treatment effects and worried about the side effects of treatment, older age, poor family support and lost contact. Of the 278 patients who discontinued treatment, the most common reasons for discontinuing treatment were patients or their families or friends experienced negative treatment effects and worried about the side effects of treatment, inconvenient transportation, patients or their family considered the patients poor physical condition, difficulty in enduring any condition likely to cause physical discomfort from the disease treatment, poor treatment effect and selected complementary and alternative medicine. CONCLUSION: Case managers can provide positive communication and available resources in relation to cancer treatment. A case management programme can help patients cope with the difficulties encountered during the treatment period.


Assuntos
Neoplasias Colorretais/terapia , Pessoal de Saúde/psicologia , Recusa em Tratar/estatística & dados numéricos , Doente Terminal/psicologia , Doente Terminal/estatística & dados numéricos , Recusa do Paciente ao Tratamento/psicologia , Recusa do Paciente ao Tratamento/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Taiwan
17.
J Adv Nurs ; 74(7): 1639-1648, 2018 Jul.
Artigo em Inglês | MEDLINE | ID: mdl-29741782

RESUMO

AIM: Identification of risk factors predicting the development of death rattle. BACKGROUND: Respiratory tract secretions, often called death rattle, are among the most common symptoms in dying patients around the world. It is unknown whether death rattle causes distress in patients, but it has been globally reported that distress levels can be high in family members. Although there is a poor evidence base, treatment with antimuscarinic medication is standard practice worldwide and prompt intervention is recognized as crucial for effectiveness. The identification of risk factors for the development of death rattle would allow for targeted interventions. DESIGN: A case-control study was designed to retrospectively review two hundred consecutive medical records of mainly cancer patients who died in a hospice inpatient setting between 2009-2011. Fifteen potential risk factors including the original factors weight, smoking, final opioid dose and final midazolam dose were investigated. METHODS: Binary logistic regression to identify risk factors for death rattle development. RESULTS: Univariate analysis showed death rattle was significantly associated with final Midazolam doses and final opioid doses, length of dying phase and anticholinergic drug load in the pre-terminal phase. In the final logistic regression model only Midazolam was statistically significant and only at final doses of 20 mg/24 hrs or over (OR 3.81 CI 1.41-10.34). CONCLUSIONS: Dying patients with a requirement for a high dose of Midazolam have an increased likelihood of developing death rattle.


Assuntos
Sons Respiratórios/fisiologia , Doente Terminal/estatística & dados numéricos , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos de Casos e Controles , Fumar Cigarros/efeitos adversos , Feminino , Humanos , Hipnóticos e Sedativos/administração & dosagem , Hipnóticos e Sedativos/efeitos adversos , Tempo de Internação/estatística & dados numéricos , Masculino , Prontuários Médicos , Midazolam/administração & dosagem , Midazolam/efeitos adversos , Pessoa de Meia-Idade , Estudos Retrospectivos , Fatores de Risco , Assistência Terminal
18.
J Formos Med Assoc ; 117(9): 798-805, 2018 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-29032021

RESUMO

BACKGROUND: Withdrawal of mechanical ventilation is an important, but rarely explored issue in Asia during end-of-life care. This study aimed to describe the clinical characteristics and survival outcomes of terminally ill patients undergoing withdrawal of mechanical ventilation in Taiwan. METHODS: One-hundred-thirty-five terminally ill patients who had mechanical ventilation withdrawn between 2013 and 2016, from a medical center in Taiwan, were enrolled. Patients' clinical characteristics and survival outcomes after withdrawal of mechanical ventilation were analyzed. RESULTS: The three most common diagnoses were organic brain lesion, advanced cancer, and newborn sequelae. The initiator of the withdrawal process was family, medical personnel, and patient him/herself. The median survival time was 45 min (95% confidence interval, 33-57 min) after the withdrawal of mechanical ventilation, and 102 patients (75.6%) died within one day after extubation. The median time from diagnosis of disease to receiving life-sustaining treatment and artificial ventilation support, receiving life-sustaining treatment and artificial ventilation support to "Withdrawal meeting," "Withdrawal meeting" to ventilator withdrawn, and ventilator withdrawn to death was 12.1 months, 19 days, 1 day, and 0 days, respectively. Patients with a diagnosis of advanced cancer and withdrawal initiation by the patients themselves had a significantly shorter time interval between receiving life-sustaining treatment and artificial ventilation support to "Withdrawal meeting" compared to those with non-cancer diseases and withdrawal initiation by family or medical personnel. CONCLUSION: This study is the first observational study to describe the patients' characteristics and elaborate on the survival outcome of withdrawal of mechanical ventilation in patients who are terminally ill in an Asian population. Understanding the clinical characteristics and survival outcomes of mechanical ventilation withdrawal might help medical personnel provide appropriate end-of-life care and help patients/families decide about the withdrawal process earlier.


Assuntos
Extubação/mortalidade , Assistência Terminal/métodos , Doente Terminal/estatística & dados numéricos , Suspensão de Tratamento , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Criança , Pré-Escolar , Tomada de Decisões , Feminino , Escala de Coma de Glasgow , Humanos , Lactente , Recém-Nascido , Unidades de Terapia Intensiva/normas , Masculino , Pessoa de Meia-Idade , Taiwan , Fatores de Tempo , Adulto Jovem
19.
J Women Aging ; 30(6): 541-552, 2018.
Artigo em Inglês | MEDLINE | ID: mdl-29111953

RESUMO

End-of-life issues are important for senior women, particularly rural women, who are more likely than their urban counterparts to live alone. The role of residence as a factor for health-care utilization among Medicare beneficiaries during the last six months of life has yet to be investigated. The purpose of this study is to examine whether service utilization in the last six months of life differs across gender and rurality. The sample was restricted to fee-for-service Medicare beneficiaries who died between July 1, 2013, and December 31, 2013 (n = 39,508). The odds of rural beneficiaries using home health (aOR 0.87; 95% CI 0.81-0.93) and/or hospice (aOR 0.82; 95% CI 0.77-0.87) in the last six months of life were lower than urban beneficiaries. Female beneficiaries were more likely to use support services such as hospice (aOR 1.24; 95% CI 1.18-1.29) and/or home health services (aOR 1.07; 95% CI 1.02-1.13) than male beneficiaries. The odds of female beneficiaries using inpatient (aOR 1.14; 95% CI 1.08-1.20) and/or outpatient (aOR 1.06; 95% CI 1.01-1.12) were higher than male beneficiaries. This research is important as we examine the range of health services used during the last six months of life, by gender and rurality. Future research is needed to understand how access to health services, residential isolation, and age- and disease-related factors relate to women's observed greater use of inpatient, outpatient, hospice, and home health services in the last six months of life.


Assuntos
Continuidade da Assistência ao Paciente/estatística & dados numéricos , Serviços de Assistência Domiciliar/estatística & dados numéricos , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , População Rural/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos , População Urbana/estatística & dados numéricos , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Masculino , Medicare/estatística & dados numéricos , Fatores Sexuais , Apoio Social , Assistência Terminal/estatística & dados numéricos , Estados Unidos
20.
Oncologist ; 22(9): 1135-1142, 2017 09.
Artigo em Inglês | MEDLINE | ID: mdl-28684551

RESUMO

BACKGROUND: Developing accurate prognostic awareness, a cornerstone of preference-based end-of-life (EOL) care decision-making, is a dynamic process involving more prognostic-awareness states than knowing or not knowing. Understanding the transition probabilities and time spent in each prognostic-awareness state can help clinicians identify trigger points for facilitating transitions toward accurate prognostic awareness. We examined transition probabilities in distinct prognostic-awareness states between consecutive time points in 247 cancer patients' last 6 months and estimated the time spent in each state. METHODS: Prognostic awareness was categorized into four states: (a) unknown and not wanting to know, state 1; (b) unknown but wanting to know, state 2; (c) inaccurate awareness, state 3; and (d) accurate awareness, state 4. Transitional probabilities were examined by multistate Markov modeling. RESULTS: Initially, 59.5% of patients had accurate prognostic awareness, whereas the probabilities of being in states 1-3 were 8.1%, 17.4%, and 15.0%, respectively. Patients' prognostic awareness generally remained unchanged (probabilities of remaining in the same state: 45.5%-92.9%). If prognostic awareness changed, it tended to shift toward higher prognostic-awareness states (probabilities of shifting to state 4 were 23.2%-36.6% for patients initially in states 1-3, followed by probabilities of shifting to state 3 for those in states 1 and 2 [9.8%-10.1%]). Patients were estimated to spend 1.29, 0.42, 0.68, and 3.61 months in states 1-4, respectively, in their last 6 months. CONCLUSION: Terminally ill cancer patients' prognostic awareness generally remained unchanged, with a tendency to become more aware of their prognosis. Health care professionals should facilitate patients' transitions toward accurate prognostic awareness in a timely manner to promote preference-based EOL decisions. IMPLICATIONS FOR PRACTICE: Terminally ill Taiwanese cancer patients' prognostic awareness generally remained stable, with a tendency toward developing higher states of awareness. Health care professionals should appropriately assess patients' readiness for prognostic information and respect patients' reluctance to confront their poor prognosis if they are not ready to know, but sensitively coach them to cultivate their accurate prognostic awareness, provide desired and understandable prognostic information for those who are ready to know, and give direct and honest prognostic information to clarify any misunderstandings for those with inaccurate awareness, thus ensuring that they develop accurate and realistic prognostic knowledge in time to make end-of-life care decisions.


Assuntos
Tomada de Decisões , Neoplasias/terapia , Preferência do Paciente/psicologia , Assistência Terminal/psicologia , Doente Terminal/psicologia , Idoso , Conscientização , Feminino , Humanos , Estudos Longitudinais , Masculino , Cadeias de Markov , Pessoa de Meia-Idade , Neoplasias/mortalidade , Neoplasias/psicologia , Relações Profissional-Paciente , Prognóstico , Qualidade de Vida , Taiwan , Assistência Terminal/estatística & dados numéricos , Doente Terminal/estatística & dados numéricos
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